The Faces & Facts behind Simon’s Law: Krissy

Simon’s Lawinsures that life-sustaining treatment (resuscitation, nutrition, medicine) will not be denied to minors without parental consent. This bill has already passed the Kansas Senate 37-3 and work on its passage in the House will continue when legislators return April 27.

The testimony for Simon’s Law in Kansas documented a consistent medical bias toward children with chromosomal disorders. Researchers and parents described how these children were denied scheduled surgeries after their genetic conditions were verified. Furthermore, they were denied treatment to save their lives after DNR (Do Not Resuscitate) orders were secretly placed on their medical charts.

The prevailing medical viewpoint on children with trisomy conditions is almost uniformly negative, essentially recommending provision of comfort care only. Kansas legislators learned that families of these children often had to fight for their child’s life both before birth, when being urged to abort, and after delivery, when physicians refused requested interventions.

Dr. Martin McCaffrey is a pro-life neonatologist with over 20 years in this arena. He supports Simon’s Law with this perspective: ”It is shocking that the neonatal community in the United States has reached a point where a significant number of providers feel it is justified to place a unilateral Do Not Resuscitate [or attempt resuscitation] order on a child’s chart, based on a neurologic prognosis which parents are perfectly willing to accept, but the medical team does not.”

Consider the stresses imposed by the medical community on the family of Kristina (Krissy) Krotzer. Her mother, Terre, writes:

“Our daughter Kristina was diagnosed prenatally with Trisomy 18. At the time they confirmed the diagnosis via amniocentesis they let us know that although we were at 22 weeks it would still be acceptable to “interrupt” the pregnancy, i.e., terminate, because the fetus was still smaller than a typical “20 week fetus” but we would need to decide quickly. We declined.

Later in our pregnancy we began preparing for our daughter’s birth. In our discussion with the doctors we were very clear that we would do whatever it took to get our daughter into this world alive. We didn’t know how much time we would get but it was important to us to give her life if at all possible.

The doctor refused to consider c-section as she said it was a non-viable pregnancy and even refused to monitor my daughter during labor because, and I quote, “I don’t want you to know if she dies or not.”

This doctor was fired.

A new doctor agreed to the c-section if necessary. We scheduled a day to induce (at 39 weeks) so that this doctor would be guaranteed to be there as he was the only one we trusted to give our daughter a chance.

We were very clear that our birth plan was to get her into this world alive and from there decide –based on her actual overall health and medical needs– what to do each step of the way.Never could anyone have interpreted our desires to include a Do Not Resuscitate order.

Labor began and our baby’s heart rate dropped with each contraction. It was decided a C-section was necessary. Our daughter was born soon after. She presented with Apgar scores of 5 and 8 and needed only a small amount of “blow by” oxygen. We spent time together and she was taken to the intermediate care NICU for more evaluation and monitoring. She did fine, and we went home 5 days later with our tiny 3lb. 8oz. little girl.

Krissy’s 16th birthday

Today Krissy is 16 years old and a sophomore in high school. While she’s had a handful of medical issues, Kristina has done well.

Four years ago I was looking through the medical records from Kristina’s birth and found that– unbeknownst to us– the hospital had placed a DNR on Kristina prior to her birth.

This DNR was not our choice or decision and if I hadn’t looked back at the records, we never would have known. To this day, every time Kristina is hospitalized we get challenged over the fact that we have her listed as a full code.

We were once told by a physician, ‘you’ve had 10 good years with her, isn’t that enough?’

Krissy has a happy, healthy, full quality of life. When that changes, our decisions might change. But either way it should always be our choice.”

Terre Krotzer expresses the sentiment of many families who testified in support of Simon’s Law. Just imagine how you’d react to doctors who think your child has lived long enough. Imagine having to constantly fear that medical personnel might refuse to sustain the life of your child.